Yes, I Lied About My Blood Sugar Levels as a Teenager with Diabetes
Sensitive Topic Warning: This article includes a personal account of disordered eating. Disordered eating is a serious condition with serious consequences. If you are struggling with any form of disordered eating, please reach out to your healthcare team or emergency services.
Being a teenager is already hard, but the burden is much worse when you throw type 1 diabetes, a lack of emotional support, struggles with body image and shame on top of it!
At least, it felt that way for me.
My early years with type 1 diabetes
When I was diagnosed with type 1 diabetes at 10 years old, I spent a week in the hospital learning all about it from different doctors and nurses. I learned how to administer insulin on an orange. I received many gifts from the hospital staff and some of my family members, including several stuffed animals (some of which also had diabetes) and dolls—but sadly, no ice cream.
My mom and dad accompanied me during my whole hospital stay. My mom slept on a cot next to my hospital bed and didn’t leave much, and my dad went to work every morning but returned every evening to check in on us. Sometimes, he brought my younger sister with him.
I really wanted that ice cream! I begged my parents to take me to Dairy Queen when we were finally headed home from the hospital, but they said they didn’t know if I’d be able to eat ice cream anymore. I shuddered at the thought.
It was an overwhelming experience for a 10-year-old girl in the fourth grade. I remember crying about it for several weeks following and only finally perking up after my sister accused me of acting like a baby. I couldn’t stand that! I set out to prove her wrong.
I became an adult at 10-years-old in many ways.
I grabbed diabetes by the horns!
I’ve always been an independent person, especially when managing type 1 diabetes.
I have required very little hands-on help from my parents since the beginning of my type 1 diabetes journey. Even at 10 years old, I told my mom that I wanted to do all of my insulin shots and blood sugar monitoring myself. She was proud of my attitude and let me proceed.
I remember taking diabetes head-on like I remember learning to tie my shoes. For some reason, I was adamantly against learning how to tie my shoes. I really can’t tell you why. I just was! But then, one day, I did it. I did it, and it was done. I never needed help again.
This experience was very similar to how my family and I approached my type 1 diabetes management. Of course, my parents would ask me how I was doing, and they supported me financially until I was a liberated adult making my own money, but the rest of it was all me!
I wouldn’t have had it any other way. But there were still a few aspects of my teen years with type 1 diabetes that I wish had been significantly different.
My teenage years with type 1 diabetes
I was excited to enter high school, not only because it came with the possibility of meeting new friends and auditioning for leads in the school musicals and plays, but because it meant I’d have more autonomy with my type 1 diabetes management.
In elementary and middle school, my teachers made me go to the nurse every time I needed to take an insulin shot or check my blood sugar levels. In high school, they let me carry a purse with my diabetes supplies, take my insulin when and where I wanted to, and never report to them.
This new dynamic was great for the most part, but it also further isolated me from sharing my type 1 diabetes experience with anyone. Seeing the nurse was one of the few outlets I had to express any management concerns or struggles.
On top of feeling like I was the only one going through type 1 diabetes in the world, I also experienced hurdles that many teenagers face regardless of diabetes. I dealt with toxic relationships, peer pressure, bullying, a poor body image that led to disordered eating, stress, anxiety and family and friend distress. Any teenager may face these challenges, but anxiety, depression, and disordered eating tend to be more common among teenagers with type 1 diabetes.
Oof! As cliché as the phrase is, you really couldn’t pay me to go back—no thank you! Being a teenager is hard.
Teenagers are mean—especially to themselves
My junior and senior years of high school were stressful. During the summer between my junior and senior years, I gained a lot of weight, and I was mortified. I was the heaviest I’d ever been. I’d also been elected to the homecoming court (somehow), which meant I had to have my picture taken in the local newspaper and posted on Facebook.
If something was on Facebook, it was a big deal back then. It felt set in stone. You didn’t accept an underclassmen’s friend request, and you certainly didn’t post or want someone else to post an “ugly” picture of you.
Some of my classmates also expressed their shock that I was voted on the court, making me feel worse. While this should’ve been an exciting and uplifting moment for me, I only felt anxious that I might be a target of bullying because I took one of the “popular” kids’ spots.
I thought I was only valuable if I was “skinny”
My junior year was especially rough for me emotionally, and I could’ve quickly digressed to bad old habits while experiencing this during my senior year of high school. Luckily, I didn’t (even though I was lured in that direction). For one week of my life during my junior year, I stopped taking my insulin completely.
This choice was incredibly dangerous and could have led to diabetic ketoacidosis (DKA).
I remember getting the idea to do it while reflecting on my original journey to a type 1 diabetes diagnosis. I lost a lot of weight when I was without insulin until my diagnosis. That was one of the warning signs I had type 1 diabetes, to begin with. So, I thought that if I stopped taking my insulin, I would lose a lot of weight again and feel valuable and pretty once more. I had a completely skewed vision of what that meant at the time and where my true worth derived from.
I was desperate to do anything to make myself feel worthy.
So, maybe I do want to go back to high school on some level (for an hour or two) and be the self I am now that the girl I was needed. I would hug her and let her know that her value extended far beyond that and was completely separated from any vanities or unrealistic societal expectations.
On top of having a poor body image that led to disordered eating and life-threatening insulin omission, I was not getting the support I needed from any authority figures around me.
While all of this was going on, I saw a doctor to manage my type 1 diabetes with my mom. My teen years were full of consistently high blood sugar levels, primarily due to a poor body image and a lack of access to technology like a continuous glucose monitor (CGM).
At the time, I was told that a CGM wasn’t covered under my parents’ insurance and, therefore, would be incredibly expensive. The same was said to me about an insulin pump.
When I saw my doctor, they would yell at me about these blood sugar levels, accusing me of lying and pressuring me to “tell the truth.”
This communication style did not work for me, and although I was lying about the two weeks’ worth of numbers I’d logged to present to her, I felt more scared to admit that I couldn’t handle being a teenager with type 1 diabetes anymore.
The emotional weight of type 1 diabetes was more pressing than the number I was fixated on achieving on the scale. I was burnt out, and I didn’t know what to do. I remember crying to my dad in the car in a Petco parking lot that I “hated a part of me I couldn’t change.”
I thought I was a bad person. I feared I would be in trouble if I admitted I was fabricating my logbook. Everyone around me was implicitly teaching me that if my blood sugar levels weren’t “perfect,” I was a “bad diabetic” and would probably die young.
Today, I think back about this and wonder how much anyone was willing to assist me in my blood sugar management. Maybe they were confused, scared and agitated in different ways than I was.
What drove me to turn it around
After the appointment I had during the week when I stopped taking my insulin, my doctor and parents yelled at me. None of them understood what was going on. I needed more attention and support, but I didn’t get either.
I didn’t know how to communicate my needs because I genuinely didn’t understand them. I didn’t have those emotional tools, and I wasn’t being offered them. So, I had to figure it all out on my own.
The only thoughts that drove me to were to prevent myself from getting in trouble and burdening my parents with any financial problems. My doctor threatened that I would have to go back to the hospital because they couldn’t help me there.
That mindset wasn’t healthy, but at least it led me to better physical health.
While I understand that I was lying, and that’s not okay, my doctor should’ve done better at approaching the situation with a gentle ear and friendly voice rather than playing the shame and blame game. They should’ve asked why I was lying and offered me the mental support I needed to truly thrive and create a healthy mindset around how I looked at myself and approached my diabetes.
I did it. I turned it around, and my doctor said, “Wow, I must’ve gotten through to you.” I guess, but at what cost?
Today, I know I’m not a burden—neither are you!
The way I was spoken to at these appointments and the lack of emotional support I received as a teenager taught me that I was a burden and a failure early in my life. This understanding ricocheted across all other aspects of my life and set an unhealthy precedent for how I perceived myself well into my mid-20s.
Luckily, I did the work to pull myself out of the physical ramifications of poor blood sugar management by seeking resources beyond my parents, teachers and healthcare team. And I did the work to overcome the feeling of being a burden through years of therapy.
Here are four things I hope you keep in mind when speaking to a teenager with type 1 diabetes:
- The way you speak to teenagers matters. Gentle communication goes a lot further than the shame and blame game!
- Independent teens still need emotional support. They are still children, and they still rely on adults—even if they don’t want to admit it.
- Though mental health may not be a doctor’s specialty, every doctor helping patients manage diabetes should be equipped with skills to support them emotionally.
- If you are a teenager and not getting the emotional support you need to manage your diabetes, you are not alone. There is a community of people just like you waiting to embrace, support and love you.
Remember, diabetes is constantly challenging, exhausting, scary and overwhelming. Every single person with any type of this disease deserves compassion, patience and support.